i need another cup of coffee first

Rare Disease and Genetic Syndrome Day

Today is Rare Disease Day. While I am not exactly jazzed about calling myself and my sons “diseased”, (Maybe call this Rare Genetic Disorder Day? Not much better, but it sounds less like we have the plague.) I am excited to have a day to spread awareness about Beckwith Wiedemann Syndrome.

Some quick facts:

Though rare, Beckwith-Wiedemann Syndrome is one of the most common overgrowth syndromes currently known.

About 1 in 13,800 children will be born with BWS. 300 Beckwith-Wiedemann babies are born in the US every year.

1 in 5 babies born with BWS will die in childhood due to complications.

Children with BWS are 600 times more likely to develop childhood cancers.

Reading that again reminds me that my family is currently beating the odds. We are so very fortunate to be healthy (so far). I urge you all to read more about genetic disorders, especially those that affect the health of children. Wear jeans today and, if you can, donate to a foundation or charity that is working towards a cure for these disorders or help for families living with them!